Re: Re: XMRV in families affected by Autism and other Neuroimmune Diseases

[Guest guest]

Very thoughtfull.  As parents we have a big enough guilt load, no need to

increase our anxiety. 

 

Thanks,

 

From: Lori <lbharris@...>

Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

Date: Thursday, January 20, 2011, 9:21 PM

 

Hi Jen,

Dr. G has been drilling into his patient, their siblings and families, to keep

their immune systems cool. The easiest and most effective way is through diet.

Ideally, through gestation and through infancy is the easiest and most effective

time to eliminate any and all foods known to cause allergies, therefore

introducing them at a much later age then standardly recommended.

I know Dr. G saved my second son, who was 17 months when we started with Dr.

Goldberg and already had a chronically green mucousy discharge from his nose,

foul (did I say FOUL!!!!) bowel movements, a bout with pneumonia, born jaundice

and a few other physical symptoms that were indicative of immune issues,

allergies perhaps asthma and most likely somewhere in the ASD spectrum if left

unchecked. Diet alone made a HUGE difference for this guy. By the time I became

pregnant with my third child, I was well aware of what to do in pregnancy and in

her early years and Dr. G walked me through each step, including vaccination

recommendations and schedule. Both younger sibs are fine, really fine, even the

middle guy that I was most concerned about who started off with more immune

triggers then his older ``ASD`` brother, was recently tested by the school, at

age 9, for being gifted. After 3 elimination screens, he came within 2 % of the

98% needed to be in the

gifted program here in Ontario. He is very athletic, plays select hockey and

soccer, guitar, is extremely social, knows everyone and is liked by everyone, is

very energetic, sweet, funny – he really is the whole package, yet I am still

careful with his diet and especially cow`s dairy. However, he is absolutely

fine, physically, socially, cognitively - healthy, healthy, healthy. I strongly

feel that as long as his diet is free of immune triggers that will cause

inflammatory reactions, he will be way ahead of his peers in terms of long term

health. My youngest has absolutely no allergies and while she can eat anything,

I still don`t allow her the things that I know can and will stress her immune

system. Certain things will just NEVER be part of our diet and I believe that

will give my kids the edge in terms of their long term health, regardless of

what underlying viruses may be within their makeup, or they have been exposed to

from me, their environment

or anywhere else.

Don`t stress yourself or spend valuable energy worrying whether you passed a

virus along to your children through nursing them, or even growing them or

birthing them. This happens to adopted children too. Breast feeding is the

healthiest way to feed your baby and the alternative of formula is filled with

so much garbage like processed bovine dairy, corn derivatives and a host of

other unpronounceable things that would not have done your babies any better.

Without guilt, or paranoia, we must also realize that a great part of the

population is or will be ill. Not just from xmrv, or any other virus or retro

virus that may or may not turn up, but because the world is changing and this

world has become so quick and dirty that there are no simple answers. Debates on

food and air quality, chemicals, processing, electromagnetic fields with cell

phones and wireless devices, and so on…nothing is simple and there are no easy

answers. We just learn, evolve and continue to make the best choices for our

children. We can`t freak out at the possibilities. If it were as simple as the

worst case scenario, I really believe there would be far more ill children and

adults. Kids are recovering. However, it is a life`s work to keep any child

healthy in this world today. Yet without over simplifying, I think a lot of the

solution is still diet, diet, diet. Garbage in, garbage out. It is tough. Folks

complain. But it works at

keeping the immune system cool and letting the body function it`s best. While

it is obviously not the whole answer, it is the best start and the best

maintenance, for any child, any adult.

Again, just my two, or three cents.

Lori

_____

From: [mailto: ] On Behalf Of

Sent: January-20-11 3:24 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Lori, I have 2 NT kids besides, and they developed food allergies too! So now

the whole family is on a GF/CF diet along with any other triggers we have

figured out along the way (like nuts, egg yolks) cause problems for us too. Its

very possible that the whole family is affected and we need to do everything we

can to keep inflammation under control until we figure out who is or isnt

affected by this retrovirus. I wonder if I passed on what I have to my kids

since I nursed them...

-Jen

>

> > And its these types of retroviruses that we think trigger the immune

system’s

> >inability to properly control the other viruses that NIDs treats †" like

HHV 6,

> >CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

> >antibodies to these viruses †" which react to the typical tests, but in

fact it

> >is trying to fight off something else †" like a retrovirus?

> >

> > My son has constantly high IgG titres to EBV and CMV, but negative IGM

titres

> >for the last 12 years. An exhaustive study at UCLA by the Professor ,

> >head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC could

> >not, via PCR find any evidence of an EBV infection!

> >

> >

> > This is what we are talking about

> >

> >

> >

> > _____

> >

> > From: <mailto:%40>

<mailto:%40> [mailto:

<mailto:%40> <mailto:%40> ] On Behalf Of

> > Sent: Wednesday, January 19, 2011 12:02 PM

> > <mailto:%40>

<mailto:%40>

> > Subject: Re: XMRV in families affected by Autism and other

Neuroimmune

> >Diseases

> >

> > I am not sure what you are getting at but XMRV is a retrovirus...another

> >retrovirus you may have heard of before? HIV. XMRV is a most likely a very

> >serious pathogen, maybe even the root cause of immune dysfunction in autism,

CFS

> >and more. This retrovirus has been found in the most aggressive forms of

> >prostate cancer, and in breast cancer. This is probably one of the biggest

> >discoveries related to autism yet.

> >

> > --- In <mailto:%40>

<mailto:%40> <mailto:%40> , erikadyan71@

> >wrote:

> > >

> > > Now what......?!

> > >

> > > I am not trying to stir the pot.....it is just that we ALL have viruses in

> >our body. Correct me if I am wrong, but we don't even have cures for the

current

> >viruses " treats " .....

> > >

> > > Just thinking out loud!!

> > >

> > >

> > > .

> > > Sent on the Sprint® Now Network from my BlackBerry®

> > >

> > > XMRV in families affected by Autism and other Neuroimmune

> >Diseases

> > >

> > > I have attached a photo of the poster from Dr. Mikovits' presentation this

> >past week. Entire families were tested for the XMRV retrovirus and

antibodies,

> >and the evidence shows that almost the whole family is affected.Â

This is an

> >infectious disease that should be addressed and deserves much attention!

> > > Â

> > > Here is an explanation for the poster:

> > > Â In each of the 6 clusters, the top 2 are the parents with the

children

> >underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

> >Under each shape is their XMRV result. V= virus found in culture, Av =

antibody

> >test, NT=not tested

> >

> > >

> > > Family 1, upper left corner †" One parent XMRV + for virus by

culture and

> >XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

> >symptomatic. Child with Autism, XMRV + for the virus.

> >

> > >

> > > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody. Two

> >children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.

> >

> > >

> > > Family 3, upper right corner †" One parent with CFS and XMRV+

for virus by

> >culture. Child with Autism, XMRV+ for virus by culture.

> >

> > >

> > > Family 4, bottom left corner †" One parent with CFS and XMRV +

for virus by

> >culture. Two children with Autism, both XMRV+ for virus by culture.

> >

> > >

> > > Family 5, bottom row, middle †" One parent with CFS,

Fibromyalgia and XMRV+

> >by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.

> >

> > >

> > > Family 6, bottom right corner †" One parent with CFS and XMRV+

by antibody.

> >Child with Autism, not tested for XMRV.

> >

> > >

> > > A quick summary provided by Dr. Mikovits regarding families. She can

confirm,

> >there is XMRV in children under the age of 5. To date they have confirmed

XMRV

> >in 16 of 17 families with neuroimmune disease amongst multiple members.

Finally,

> >that more work needs to be done to confirm pathogenesis and transmission

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Amber,

 

There was a pilot study on Minocycline as a treatment for autism. Here's the

link:

 

http://imfar.confex.com/imfar/2010/webprogram/Paper7547.html

 

http://clinicaltrials.gov/ct2/show/NCT00409747

 

An Immune Connection for Autism- Childrens Hosptial at s Hopkins

http://www.hopkinschildrens.org/an-immune-connection-for-autism.aspx

 

From: Amber Schneider <momo3@...>

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

Date: Thursday, January 20, 2011, 10:03 PM

 

Has anybody looked at research regarding the antibiotic Minocycline? I found a

study being done on regressive " A " but couldn't find the results anywhere. If

somebody is able to read the results or other studies about this I am

interested.

This is a study about its affects on patients with AIDS

http://www.ncbi.nlm.nih.gov/pubmed/20479889

Amber

________________________________

From: <jlhank80@...>

Sent: Wed, January 19, 2011 8:44:08 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

-Jen

>

> And its these types of retroviruses that we think trigger the immune

system’s

>inability to properly control the other viruses that NIDs treats †" like

HHV 6,

>CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

>antibodies to these viruses †" which react to the typical tests, but in

fact it

>is trying to fight off something else †" like a retrovirus?

>

> My son has constantly high IgG titres to EBV and CMV, but negative IGM titres

>for the last 12 years. An exhaustive study at UCLA by the Professor ,

>head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC

>could not, via PCR find any evidence of an EBV infection!

>

>

>

>

> This is what we are talking about

>

>

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: Wednesday, January 19, 2011 12:02 PM

>

> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

>Diseases

>

>

>

>

>

> I am not sure what you are getting at but XMRV is a retrovirus...another

>retrovirus you may have heard of before? HIV. XMRV is a most likely a very

>serious pathogen, maybe even the root cause of immune dysfunction in autism,

CFS

>and more. This retrovirus has been found in the most aggressive forms of

>prostate cancer, and in breast cancer. This is probably one of the biggest

>discoveries related to autism yet.

>

> --- In <mailto:%40> , erikadyan71@

>wrote:

> >

> > Now what......?!

> >

> > I am not trying to stir the pot.....it is just that we ALL have viruses in

>our body. Correct me if I am wrong, but we don't even have cures for the

current

>viruses " treats " .....

> >

> > Just thinking out loud!!

> >

> >

> > .

> > Sent on the Sprint® Now Network from my BlackBerry®

> >

> > XMRV in families affected by Autism and other Neuroimmune

>Diseases

> >

> > I have attached a photo of the poster from Dr. Mikovits' presentation this

>past week. Entire families were tested for the XMRV retrovirus and

>antibodies, and the evidence shows that almost the whole family is

affected.Â

>This is an infectious disease that should be addressed and deserves much

>attention!

> > Â

> > Here is an explanation for the poster:

> > Â In each of the 6 clusters, the top 2 are the parents with the children

>underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

>Under each shape is their XMRV result. V= virus found in culture, Av = antibody

>test, NT=not tested

>

> >

> > Family 1, upper left corner †" One parent XMRV + for virus by

culture and

>XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

>symptomatic. Child with Autism, XMRV + for the virus.

>

> >

> > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody.

>Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

>

> >

> > Family 3, upper right corner †" One parent with CFS and XMRV+ for

virus

>by culture. Child with Autism, XMRV+ for virus by culture.

>

> >

> > Family 4, bottom left corner †" One parent with CFS and XMRV + for

virus

>by culture. Two children with Autism, both XMRV+ for virus by culture.

>

> >

> > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia

and

>XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

>antibody.

>

> >

> > Family 6, bottom right corner †" One parent with CFS and XMRV+ by

>antibody. Child with Autism, not tested for XMRV.

>

> >

> > A quick summary provided by Dr. Mikovits regarding families. She can

confirm,

>there is XMRV in children under the age of 5. To date they have confirmed XMRV

>in 16 of 17 families with neuroimmune disease amongst multiple members.

Finally,

>that more work needs to be done to confirm pathogenesis and transmission

> >

> >

> >

> >

> >